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Posted 2/27/2017 4:54 PM (GMT 0)
Hi All,

I need to update my signature. Thanks to everyone on this list that pushed me to get a second opinion from Johns Hopkins! I just got the report...

My 8(4+4) went to a 7(4+3) and my 7 went to a 6(3+3)... so, in JH's opinion, out of the 12 samples I have 7(4+3), and two 6's (3+3)'s.

Had my MRI today and F/U on Friday with Urologist.

Thank you,
Tim
Posted 2/27/2017 4:57 PM (GMT 0)
Glad to hear it! I had the misfortune of having my biopsy reading go the other direction, but regardless this underscores the importance of having the best read the slides so you know you're making decisions with the best data. Good luck on Friday!
Posted 2/27/2017 5:16 PM (GMT 0)
Great news Tim! Good news is hard to come by sometimes, take your partner out and celebrate it!

Significant downgrade. Let us know the results of your Friday tests. Wonder if the downgrade changes your treatment path ?
Posted 2/27/2017 5:26 PM (GMT 0)
Now that is good news. You may have gone down on the risk chart. Gleason 7 has to be better than Gleason 8. Keep us posted on your treatment plan from here.
Posted 2/27/2017 5:38 PM (GMT 0)
downgrade is always good news.

Keep us updated,
Andrew
Posted 2/27/2017 6:48 PM (GMT 0)
That drops you from high risk to intermediate, a significant improvement indeed. Congratulations!
Posted 2/27/2017 7:20 PM (GMT 0)
Hi All,

One question is what does "Grade Group 3" mean for my (4+3) 7? Is this still intermediate? What is the relationship between "Grade Group" and the T grade system?

Thank you,
Tim
Posted 2/27/2017 7:29 PM (GMT 0)
Hi All,

I have to ask this question again... I asked it earlier, before my 8 went down to a 7 in the Johns Hopkins review... I asked about HIFU and was told no way, not with an 8. I see Dana Farber doing a trial of HIFU that requires a G6 or G7 to qualify. So I think this means I'm "newly eligible" for HIFU...

Has anybody in this forum tried HIFU? Any opinions on this relatively new (in USA anyway) treatment?

Thank you,
Tim
Posted 2/27/2017 7:33 PM (GMT 0)
The "Grade Group" is a newer scoring system that will likely eventually replace the Gleason system.

Here is how the numbers relate -

Gleason Group I = Former Gleason 6
Gleason Group II = Former Gleason 3 + 4 = 7
Gleason Group III = Former Gleason 4 + 3 = 7
Gleason Group IV = Former Gleason 8
Gleason Group V = Former Gleason 9 or 10

Because you are a G7 (4+3) your are "Group 3".


Jon
Posted 2/27/2017 7:33 PM (GMT 0)
Gleason 7 (3+4) is considered Grade Group 2 and is sometimes referred to as "favorable intermediate risk." Gleason 7 (4+3) is considered Grade Group 3 and "unfavorable intermediate risk." The difference is which cell type is primary in the sample: 3 or 4. In your case, there were more 4 cells and of the two intermediate categories, yours is not considered as good.

But...it's significantly better than being in the high risk group and can quite possibly make a difference in your treatment plans.
Posted 2/27/2017 7:38 PM (GMT 0)
Hi Jon,

That makes a lot of sense... I have read that a 4+3 is considered (not by everyone, apparently) significantly worse than a 3+4. I read one study that suggested the 4+3 10 year mortality rate is about 3 times a 3+4. So I'm still not "out of the woods"...

I know that an 8 is considered "high risk". What about a group III? Is that considered intermediate as RedWing suggested? I'm not discounting what he said... I think he is one of the people that pushed me to get the Johns Hopkins second opinion, for which I will be forever grateful, but I wouldn't mind getting some confirmation of that.

Thank you,
Tim

Post Edited (TimOz) : 2/27/2017 12:43:37 PM (GMT-7)

Posted 2/27/2017 7:40 PM (GMT 0)
Hi Michael,

That is what I'm hoping. I also read an article written by a Johns Hopkins Doctor that said almost 50% of the 4+3's found in biopsies turned out to be a 3+4 after surgery... so that is good news too.

http://urology.jhu.edu/newsletter/prostate_cancer_discovery_96.php

Thank you,
Tim
Posted 2/27/2017 7:54 PM (GMT 0)

TimOz said...
I know that an 8 is considered "high risk". What about a group III? Is that considered intermediate as RedWing suggested?

I think it's true a G7 (3+4) is not as bad as a G7(4+3). I am also a G7(4+3) post surgery and I have had a recurrence in spite of a good pathology report. You just never know what the outcome will be.

So yes I think Grade Group 3 is "intermediate" risk and it's lots better than the higher risk grade group 4 (G8). You should be drinking champagne (or a really good IPA) tonight.

I don't know much about HIFU but I think as you noted it's still on the fringe, in trials etc. I wanted a therapy with a more proven track record but to each his own, do your research and pick an option.

Jon
Posted 2/27/2017 8:00 PM (GMT 0)
Hi Tim and congratulations on your new numbers. That certainly opens up your options, especially with your relatively low PSA.

We have had very few members here who have used HIFU for whole gland ablation (or targeted for that matter). The process was just approved in the USA by the FDA a little over a year ago. It has been used in Europe for years.

If I were in your shoes, here are the concerns I would have about going the HIFU route:

1. There are few if any experienced practitioners in the USA so you will likely be going with someone who has limited experience in this.

2. I get that Dana Farber is a a great place but do your really want to be part of a "trial" when other treatment options are well established to be curative for your diagnosis?

3. Why do you think that HIFU is in any way superior to your other options? I get avoiding the SE's of surgery, but SBRT, HDR Brachy and LDR Brachy are all well known options that are likely to cure you with fewer SE's than surgery.

Anyway, food for thought...

Jim
Posted 2/27/2017 8:21 PM (GMT 0)
Hi Jim,

Your points are well taken. I'm very concerned about surgery as I had a bad outcome from a back surgery that has changed my quality of life. It was the worse decision I have ever made. Of course, I stayed here "On Cape" instead of heading up to Boston. That is a mistake I will not make again.

In the end I will probably go with the tried-and-true. Anyway... thank you for your input.

Thank you,
Tim
Posted 2/27/2017 8:57 PM (GMT 0)
Tim, An article with a bit more detail on the new grading system, with comments by Dr. Epstein.

http://www.hopkinsmedicine.org/news/media/releases/new_condensed_grading_system_shown_accurate_for_predicting_prostate_cancer_outcomes
Posted 2/27/2017 9:29 PM (GMT 0)
Don't get Grade Group confused with Risk Group. Grade group only refers to the two most prevalent Gleason grades. It just adds a new number (and confusion) to the Gleason scoring system - you can ignore it. Risk group refers to risk - mostly a combination of grade, PSA and stage. The new risk group called "favorable intermediate risk" means that the highest grade is 3+4, less than half the cores are positive, PSA<10, and stage is T1c or T2a.

If I remember correctly, you had cancer on both sides and throughout the apex. That would usually rule you out as a candidate for HIFU because you don't want to destroy your sphincter tissue and be left with lasting incontinence. Read this:

/pcnrv.blogspot.com/2016/12/focal-ablation-unresolved-issues.html
Posted 2/27/2017 9:47 PM (GMT 0)
Hi Allen,

Thank you for this link. That is a great site... I think one of the main side effects of a prostate cancer diagnosis is the headache one gets from trying to absorb too much information in too little time. I don't even understand half of what I see in that article but it doesn't sound positive on HIFU.

One thing that I don't understand (or one more thing...) is the "Heat Sink" concept (second law of thermodynamics)... would that not apply to radiation as well. I'm not a physics expert but I thought that radiation is also a form of electromagnetic energy. I probably just don't have the knowledge to understand the point there. But what little physics I know suggest to me this argument is one that is not unique to HIFU.

Anyway... the odds are I'm not going to have HIFU... I'm very curious about it though. One thing I do want to avoid is surgery...

-----

Here is another question... has anybody ever traveled to Johns Hopkins to have them determine the best treatment path? I don't think it would be practical for me to go there for treatment but it seems like it might be worth having them provide the plan I follow back at home. I know Boston has great hospitals but it seems like J.H. is ahead on this type of cancer.

Thank you,
Tim
Posted 2/28/2017 12:43 AM (GMT 0)
Like all major hospitals, Johns Hopkins has both strengths and weaknesses. It is very strong at surgery and medical oncology, but doesn't really offer much in terms of radiation treatments. MSK is probably one of the best all around, as are the Harvard-associated hospitals in Boston. There is really no advantage other than convenience of one-stop shopping to finding all your experts at one institution. You would do just as well meeting with individual experts, wherever they may be. The key is patient empowerment -- it is up to you alone to seek out info, understand it, and make your own decision.

The heat sink effect only applies to thermal treatment. X-rays are non-thermal. They work by inserting hydroxyl radicals (mostly) into the DNA of cancer cells which then die when they try to replicate. With todays linacs, Xrays are placed with submilimeter accuracy. The entire contour plus a margin of the prostate is treated. Healthy tissue (within or outside of the treatment zone) self-repairs, or dies if it cannot (apoptosis). Cancer cells cannot self-repair or undergo apoptosis. By contrast, HIFU is thermal ablation - it literally "cooks" all cells - it boils the water inside the cells, cancerous or healthy, within the treatment zone. Because of the heat sink effect, some cancer cells in the treatment zone are undercooked, and some healthy cells outside of the treatment zone are damaged.
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